Batten Disease Support and Research Association

Description: International support and research networking organization for families of children and young adults with Batten Disease. Sponsors education, advocacy, and support programs. Funds research, and sponsors a tissue donation program.

National 501(c) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.